Feudtner Laboratory Research Overview

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The Feudtner Lab pursues research devoted to advancing the well-being of children, adolescents, and young adults with complex chronic conditions and serious, often rare, illnesses, and to promote the well-being of their families. Our research strives to improve our understanding of these conditions, the impact they have on the lives of these individuals and their families and how to improve clinical care and health policy to improve patient and family outcomes. The lab's research efforts include large scale epidemiologic and health services research studies in the arenas of pediatric palliative care and medication exposure, as well as intimate interview studies of parental stress and parental decision-making of parents of children with serious illness. In addition, the Feudtner Lab's conducts research and produces academic work in the field of medical ethics.

The Feudtner Lab has championed the conduct of prospective cohort studies of parental decision-making in pediatric palliative care, employing a mixed methods approach. These studies have substantially advanced the understanding of the "real-time" psychology of how parents conceive of the decisions they are being asked to make, the influence and complexity of emotions, a sense of duty to be a "good parent" when making these decisions, and the relationship between trust in medical providers and decision-making preferences.

The Feudtner Lab has conducted or collaborated on most of the "big data" studies of pediatric palliative care. This work has been instrumental in justifying the need for pediatric palliative care services and characterizing the nature of these needs. The Feudtner Lab is currently coordinated with six other children’s hospitals across the United States to conduct a five year prospective cohort study of pediatric palliative care patients and their parents: the Pediatric Palliative Care Research Network’s SHAred Data and REsearch (SHARE) study. Baseline data from this study showed that the majority of children receiving palliative care were experiencing 5 or more symptoms (polysymptomatology), and an important sub-group of patients suffered frequently from numerous severe symptoms.

The Feudtner Lab research began by conceptualizing complex chronic conditions as a means to see the forest for the trees amidst all the rare diseases in pediatrics, and operationalized this concept using ICD codes. This work has substantially influenced the study of children with serious illness with the Clinical Care Classification System used by the Children’s Hospital Association and by numerous investigators. This work has brought the needs of this vulnerable population of patients with medical complexity more clearly into focus.

The Feudtner Lab has uncovered evidence of parental strain and distress through clinical work in pediatric palliative care and in the care of children with complex chronic conditions, as well as in the data gathered regarding how parents are feeling as they care for their children and try to make the best medical decisions on their child’s behalf. The studies conducted in this area have demonstrated several key findings:

  1. Parents have clinically significant levels of anxiety and depression, and negative emotions play a key role in critical medical decisions.
  2. Parents project a happier affect than what they self-report to be their inner reality.
  3. Mothers and fathers are likely to not be in sync with each other regarding the problems that worry them or the hopes that they hold for their child.
  4. Parents may change their goals for their child based on these emotional realities and other psychological factors, leading to the development of a conceptual model of regoaling.
  5. Parents may use spiritual and religious beliefs when coping with stress related to their child's illness, but certain kinds of "maladaptive" spiritual coping beliefs (e.g. God is punishing me) are associated with higher levels of psychological distress
  6. Many parents of children with serious illness report financial difficulties and household material hardships
  7. Symptoms a child experiences and family financial difficulties are both associated with parent psychological distress.

Because of the importance of medications to children with complex chronic conditions, including the clear benefits as well as the potential harms that they pose, the Feudtner Lab investigates the use of medications in the pediatric population broadly, with a particular focus on children with serious illness and the use of palliative care-relevant medications, as well as potential drug-drug interactions. The lab has conducted the largest studies in this area to date, providing generalizable population-level estimates.

The Feudtner Lab conducts research and scholarship regarding various medical ethics topics, including work that brought to light the ethical dilemmas that medical students confront, the importance of a complete model of "hope" to understand an ethically appropriate way for clinicians to interact with patients’ and parents’ hopes, the importance of acknowledging parent spiritual and religious beliefs, the ethically important characteristics of comparative effectiveness research, and the influence on decision-making by physicians and other clinicians regarding the care of children with serious illness.

The Feudtner Lab conducted the the Confronting Adversity through Regoaling Engagement (CARE) study to explore how pediatric oncology teams reach the decision to refer patients to specialty palliative care and what facilitates or inhibits these referrals. Jennifer Walter has also conducted research on how to improve family meetings between medical teams and families.

Children with serious life-threatening illnesses are generally living longer with significant and complex care needs in the home setting; yet, these children and families may not receive consistently high-quality pediatric palliative and hospice care in the home setting (PPHC@Home). Sub-par PPHC@Home has far-reaching implications for child and family quality of life, satisfaction with care, family bereavement outcomes, cost of care, and health care resource utilization. In order to ensure high-quality PPHC@Home for the many U.S. children living with serious illnesses and their families, the first step is to understand what families caring for their children at home experience from their care teams. In our current research, we have developed and are currently testing the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Questionnaire, a 23-item questionnaire to evaluate families’ experiences with receiving PPHC@Home for their children living with serious illness. We are also working to understand how clinically useful this information is for palliative care teams. Our hope is that the EXPERIENCE questionnaire can eventually be used, in real time, by palliative or hospice care teams to better understand what families are experiencing at home, what families need from their teams, and how teams can better support families in caring for their child at home.